America Living With AIDS

AMERICA Living With

ously hampers efforts to recruit
underrepresented people into clinical
trials, this does not mean it is impossible to do so. Current efforts at NIH to
expand the recruitment of underrep
)ur medical
rse, are going
idress ways
pace with this
ly in terms of,but equally
in training
o will be able
search effort
clinical care
uture. We will
he financial
is treatment
n addition the
opulation
potential
t, which may
the future.
'ZO, M.D.
1990

resented populations in the
ACTG have enjoyed initial
success and should be continued and increased.
Children with HIV disease also have many problems with access to experimental treatments; again,
some problems are
unique to HIV and others
are not. The vulnerability
of children raises special
concerns about placing
them at risk in experimentation, even when
there are potential therapeutic benefits for the
individual children involved or for similarly situated children. However, as
the Commission pointed
out in its Third Interim
Report, science has moved
forward to the point where
the inclusion of children in
experimental HIV therapies is clearly possible.

consent means that proxy decision
makers, such as parents or other
guardians, must speak on their behalf.
In some cases, this raises further concerns because of the fragile family and
social settings in which children with
HIV disease are likely to be found.
Aside from a small fraction of transfusion-related cases, virtually all HIVpositive children have mothers who
are themselves infected with HIV and
may be sick and dying. These mothers, with limited means and waning
energy, are hard-pressed to find health
care for both themselves and their
children and may have serious difficulty in conforming to diverse
research protocols. Many young children with HIV disease are cared for by
relatives other than their parents or
are placed in foster care. It may be
difficult to secure the necessary consents for experimental HIV care; parents who relinquish custody do not
necessarily give up decisionmaking
rights regarding health care.
Concerns about scientific issues
and the vulnerability of children as
research subjects must be carefully
balanced with children's need for, and
right to participate in, research into
promising new drugs. The Commission encourages efforts to address the
special needs of the growing number
of children with HIV disease.
People with hemophilia who live
far from any ACTG or who are per
Pediatric pharmacology can differ
substantially from that of mature
adults. Put succinctly, children are not
miniature adults in regard to the types
and dosages of drugs needed for treatment of HIV disease. As with all
research involving children, their limited understanding and capacity to

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